Monday, May 18, 2020

Self-Care 1

Taking care of someone with Dementia creates a lot of strong feelings.

If you're a caregiver living in the same home with your Loved One, I can only imagine the range of feelings is incredibly intense.

Through our own experiences and from my conversations with others, many caregivers and family members feel:
  • worry
  • anxiety
  • fear 
  • grief
  • love
  • joy
  • panic
  • peace
  • helplessness
  • loneliness
  • exhaustion
  • and so many more
Through those conversations, it appears that the negative emotions often overwhelm the positive emotions, especially when the caregiver is worn out.

So, how do we create some easy self-care?

For today let's focus on online ideas because we know that some people never have a chance to get out and about.
  • Teepa Snow videos. She is brilliant and considered the leading expert on Dementia for a very good reason
  • my own Quick Tips videos
  • if you're on social media, you can check to see if there on support groups. Read the rules carefully to ensure you're going to feel safe in posting. Tread carefully at the beginning because not all online groups are created equally!
  • check out the Alzheimer's sites for ideas to help you cope
  • meditation apps and exercises
    • I've used Calm and Triangle breathing successfully with students at school
    • there are lots of options out there, keep looking until you find one that works for you
How about you? What other online supports do you use? Any experience with meditation apps?

Monday, May 4, 2020

To Celebrate or Not To Celebrate?

There are many different thoughts as to how to celebrate special days with our Loved Ones.

Each person is unique and many different factors will go into the decisions.
  • what stage is your Loved One at?
  • how aware are they of the day/date/time of year?
  • will they know about the day if you don't mention/celebrate it?
  • will the day bring good or bad memories?
  • will the day trigger thoughts about dead friends/relatives who Loved One wants to celebrate with?
One Mother's Day, Lizzie became very upset about not having ordered flowers for her mother and mother-in-law. Her mom had died when Lizzie was a teen, her mother-in-law had died more than 30 years before.

Did the good memories and the fun times we had that day out-balance the bad ones?

Yes.

Will they this year?
Who knows?

All we can do, is look at the issue from all angles and make what we think is the best decision.
Then cross our fingers and hope for the best!

Of course, if your Loved One (like Lizzie) is in a Nursing Home, this year will be very different. Because the staff at the home is amazing, we know we'll be able to video chat with Lizzie on Mother's Day, but we won't be able to bring her flowers and chocolates and her other favourites. We'll make up for it later but we wonder how this will affect her.

How about you? What do you do for celebration days like Mother's or Father's Day? Are your routines going to be disrupted by COVID-19 as well?


Monday, April 27, 2020

Visual Background Noise

For Lizzie, a lot of items in her room seem to not be visible.

While she loves her music player, she never turns it on by herself anymore. When we turn it on for her, she's always surprised by it.

Earlier in the process when Lizzie was still looking through magazines, she would only ever "see" the top one, she would never reliaze there was a stack of different magazines.

Even earlier in the process before Lizzie moved into the home, Lizzie stopped "seeing" the dust bunnies, the rings from tea mugs on the coffee table, the spots on the bathroom sink or mirror.

Photo by Nathan Dumlao on Unsplash

It seems like there is too much visual background "noise". Obvioulsy noise isn't the correct term as you can't see noise... at least I don't think you can. But the concept is the same.

In school, we teach kids to filter out the unimportant background noise and focus in on the important noise happening within the classroom. This works well until something interesting happens outside the window or in the hallway. Then all the attention turns in that direction.

For Lizzie, it's as if her brain is so focused on handling the important details of what she's thinking about or doing, that it ignores whatever isn't relevant to the immediate task.

Once the item is pointed out to her, she can see it, but until then, it's not visible.

I wonder if the brain only has so much availble "power" and only focuses on what it thinks is important at the time.

How about you? Have you experienced your Loved One not "seeing" things that are there? Any thoughts on visual background noise?

Monday, April 20, 2020

Smiles From The Dementia Files: Episode 1

Our Loved One Lizzie is an amazing lady. She is full of fun and mischief. She's always been quick-witted and more than willing to share her opinion on everything!

In our experience with dementia, we've found that laughter is important. It's a key to coping for all of us, including Lizzie. She enjoys being able to shock and surprise those around her with her quick mind and tongue. Having dementia hasn't taken that from her yet, and we hope it never does.


Episode #1
Circa Year 2 after diagnois


Lizzie: When did you last speak to your dad?

Me: Well, he died way back in 1999, so it's been a while...

Lizzie: That's right, I'd forgotten that. *sips tea* So, do you think you'll see him tomorrow?

Me: ... probably not.

Lizzie: Okay.


How about you? Does you Loved One ask about those who are long gone? 


Monday, April 13, 2020

Power of Music 1 - Classical Songs

Music is a powerful force.

Lizzie has always loved music. She grew up listening to music on the family radio. While Lizzie's mom was into Jazz and Swing, Lizzie and her brother fell in love with classical music.

At an early age, she could identify Bach from Beethoven from Brahms within only a few seconds of listening to a piece.

When we were old enough, Lizzie and my dad bought a piano on a rent-to-own program and scrounged up the money for my sister and I to take piano lessons.

Nothing made Lizzie happier than listening to us practice the piano, especially the classical pieces that were never our favourites.

Photo by Ryan Holloway on Unsplash

Now, we can often use her love of classical music to help redirect her during stressful times.

Who is your favourite classical composer/song?

Who was your favourite classical composer/song when you were a kid?

What was the first song you remember hearing on the radio with your brother?

Did you and your brother both like the same composers/songs?

When you and your brother made your bands, what songs did you play?

When you and your brother made your bands, what did you use for instruments?

Did you have other friends who liked music like you and your brother?

What did your mom and dad think about the music you listened to?

Did you ever make up words to go along with the music?

Did you sing as a family? What songs?


How about you? Do you ever use music to help redirect your Loved One? Does your Loved One enjoy classical music as well?




Monday, April 6, 2020

COVID-19 and Lockdown

The world is currently dealing with an incredibly serious virus that is calling for unprecedented safety measures being taken in many areas.

For us, one of those safety measures is that Lizzie's nursing home is in lockdown. No visitors allowed. (Our home is making exceptions for end-of-life situations and allowing limited visitors who are healthy and pass screening.) Within the home, the residents are staying within their own units (about 30 people so still opportunities to socialize) and there are no big gatherings in the common room.

We're really glad the home is in lockdown even though it means we can't see Lizzie. More than anything we want her to remain safe and healthy.

Our nursing home has a terrific staff. They are working hard to keep the residents active and talking with them and each other.

If Lizzie was on the 1st or even the 2nd floor, we've go see her and wave through the window, but from her floor she wouldn't be able to see us. At the beginning of lockdown, there was also still a lot of snow and getting around to her side of the building would have been tough anyway!

Photo by Andreea Popa on Unsplash

Lizzie no longer understands how to use a telephone so calling her isn't an option.

Within a few days of the lockdown we got a call from a staff member. They were arranging Face Time and Skype visits between residents and family. A staff member sits with Lizzie and runs the call and helps her out with the conversation. Sometimes a person on screen doesn't make sense to Lizzie.

What a great idea!! Creative problem solving at its best. It has made us all a lot happier.

How are you coping if your Loved One is in a nursing home?
If your Loved One is at your home or on their own, how is it going?

Friday, January 31, 2020

Welcome!

Welcome to Dancing With Dementia.

Our family has been dealing with dementia for a few years now, and as a writer, I find it really helps to put my thoughts and feelings down on paper ... or screen as the case may be.

In many ways, Dementia hit us without any warning. We're an immigrant family and we didn't grow up with older relatives around us. We didn't know the difference between normal aging and signs of dementia.

We made a lot of mistakes.
We did a lot of things right. Many of these right choices were simply by accident.

We're not perfect, but we're working hard to ensure our Loved One, Lizzie, has the best quality of life possible.

This blog is going to be a way to share information, ask questions, and definitely provide a few laughs. As you get to know Lizzie through this blog, you'll see that there will always be laughs and smiles when she is involved! Smiles From the Dementia Files will be a regular feature.

For practical tips that we've found very helpful, you can check out my YouTube channel. I'll talk more about these tips and others on the blog as well.

The book, Dancing With Dementia will be available on March 31, 2020. It covers the story of our journey through Dementia as well as collects tips and advice into handy lists.

The book is now available for preorder at the following locations. The price will be at $0.99 (US) for the preorders and the first few weeks after release. Then the price will jump, so get your copy now!

Amazon.com           Amazon.ca.          Apple Books.           Barnes & Noble          Kobo.      


Add it to your Goodreads shelf

For more info on the book, check out my website jemifraser.com or the MCBook tours page.

I hope some of the information you find here on the blog will help you along in your journey as we learn the steps to the Dementia dance together!